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Patient Stories

Hotel Manager Evaluates Experimental Therapies

Glenn and Carol Miller with their daughter Shawn Dean January 8, 1994

Around October, 1999, 53 year-old housewife and hotel manager Carol Miller
began feeling sick, with flu-type symptoms. She developed a deep, dry
cough. Initially, Carol got a prescription for antibiotics over the telephone.
Sometime between Christmas and the first week of January, she saw her
personal physician, who sent her to the Emergency Room of Grace Sinai
Hospital in Detroit, Michigan.

At Grace Sinai, Carol's doctors took chest films and "tapped"
her left lung. The fluid from the thoracentesis was very dark. Cytological
tests detected the presence of "reactive" cancerous cells. Her
doctors told her she had cancer. They discharged her from the hospital
pending a CAT scan scheduled at Garden City Hospital, in Garden City,
Michigan around January 13. The CAT scans were taken and then delivered
to Grace Sinai Hospital, where they were interpreted and the results given
to Carol on the morning of January 14.

The doctor at Grace Sinai told her that there was an obstruction near the
superior vena cava (the large vein to the right of the heart), three tumors
on the lining of the left lung, and also an enlarged lymph node on the
middle right side, under the breast. Carol was re-admitted to Grace Sinai
that day. She consulted with a thoracic surgeon at Grace Sinai, Dr. Bloom.
He felt it was mesothelioma based on the CAT scans. Because Dr. Bloom
strongly suspected that this was mesothelioma, he did not want to perform
a thoracotomy, but rather referred Carol to Dr. Harvey Pass at Karmanos
Cancer Institute in Detroit, Michigan. Dr. Bloom knew Dr. Pass was renowned
for his expertise in treating mesothelioma patients.

Carol met with Dr. Pass on January 20. Dr. Pass put the CAT scan films
on the viewbox and showed Carol the thickness of the lung lining. He also
pointed out two lymph nodes which were bigger than normal. He told Carol
that she also had a blood clot in the neck, which was caused by insufficient
oxygenation. Dr. Pass explained that in order to verify node involvement
in Carol's case, he would have to make an incision at the base of
the throat and use a flexible bronchoscope to examine her. Dr. Pass did
so on January 27 at Harper Grace Hospital (the hospital adjunct to Karmanos
Cancer Institute), harvesting biopsy material from the lymph nodes. The
pathology department examined this material and diagnosed mesothelioma.

After surgery, Dr. Pass said that the cancerous lymph node biopsies were
definitely related to the thickening on the left lung. He determined that
the cancer originated in the pleural cavity and had spread to the lymph
nodes. He said that given the node involvement, chemotherapy was the only
option. He mentioned a new and experimental chemotherapy which Carol would
probably qualify for. Dr. Pass did not promise a "cure" (and
he does not have a crystal ball), but his opinion was that the chemotherapy
could prolong Carol's life beyond the seven months which she could
expect if she did nothing. Dr. Pass scheduled an appointment for a week later.

The Millers met again with Dr. Pass on February 3. Dr. Pass told the Millers
that Carol's was a rare case: her mesothelioma had apparently spread
through the lymphatic system, which would tend to indicate the cancer
was advanced, and yet there was relatively very little tumor.
He offered Carol two options:

First she could participate in a single, blind, randomized Phase III study of
mulit-targeted antifolate (ALIMTA
(R)(pemetrexed disodium)) plus Cisplatin versus Cisplatin only, to be administered
once every three weeks, for three series.
Second, she could participate in a Phase II study of Gemcytabine and Cisplatin.
The deadline for enrolling in the studies was six days later. Impressed
with the results
Jim Dougherty and
Charlie Baker had obtained with ALIMTA and no surgical intervention, the Millers would
have chosen administration of MTA plus Cisplatin over Gemcytabine and
Cisplatin. However, there was only a 50 percent chance Carol would receive
ALIMTA as part of the blind study.

Carol considered asking Dr. Pass to administer ALIMTA plus Cisplatin on
a humanitarian basis; she was willing to sign any waiver or release necessary.
However, further inquiry with Dr. Pass revealed that Carol's other
option looked very promising. Carol had heard about the Gemcytabine and
Cisplatin "cocktail" which had been used with dramatically good
results with
Allan "the Big O" Ostling.

Allan Ostling's story appears elsewhere on this website, but the highlights
bear repeating here: less than a week after meeting Allan for the first
time, Dr. Pass performed exploratory surgery with the intent of performing
a pleurectomy. However, during surgery Dr. Pass found that the cancer
was more extensive than revealed by the CAT scans. The tumor had invaded
the right lung, and the lymph nodes tested positive for tumor activity.
Dr. Pass had no choice but to remove the lung. About one month later,
on November 2, 1999, Allan began to experience discomfort and bloating
in his abdomen. An ultrasound ordered two days later by Dr. Pass detected
the presence of fluid in the abdomen. His doctors removed about three
liters of fluid from the abdomen via paracentesis. Eight days later, Allan
underwent a repeat paracentesis, with another three liters removed.

On November 17, 1999, the day he testified in his lawsuit against the asbestos
manufacturers, the situation was grim for Allan Ostling. His abdomen was
distended, and his color gray. He had no appetite, and had lost 31 pounds.
Nevertheless, Allan underwent chemotherapy with the Gemcytabine and Cisplatin
cocktail. He did not give up.

The results were astonishing. On CAT scan, the fluid build-up in Allan's
abdomen known as ascites had disappeared. The swelling in his stomach
disappeared. His color improved, and he regained some of the weight he
lost. He recently felt good enough to go to dinner with his wife Jackie,
and even had a couple of beers.

Apprised of the Ostlings' experience, the Millers chose the Gemyctabine
and Cisplatin study. But Carol Miller would need every ounce of her courage
for the unanticipated consequences of her chemotherapy.

On Friday, February 11, 2000, after initial administration of the Cisplatin/Gemcytabine
cocktail at Harper Grace Hospital, Carol's whole upper body began
to swell. By Sunday, her head was so grotesquely swollen that she could
not hear or see. Her arms, chest and neck were swollen as well. She was
taken Sunday to Harper Urgent Care. Doctors there explained to her that
because the tumor in the lymph node was compressing the vena cava, the
fluids pumped in during chemotherapy flowed up through the arteries, but
could not return and were trapped.

Carol was released from Harper five days after her admission. During her
entire stay, even at night, she had to stay in a seated position. A vascular
surgeon examined her regarding placing a stint, but determined that her
body was growing other veins, making a "bypass" itself. Carol's
left lung was also full of fluid. Approximately a quart was drained via
thoracentesis. She was given blood thinner shots.

By February 17, the swelling was down, except in Carol's left arm,
and she was doing much better. On February 25, doctors drained another
2800 ccs of fluid from Carol's left lung, through a catheter in her
back, while at the same time administering the chemotherapy. Carol suffered
a collapsed lung during withdrawal of the catheter, purportedly because
of an error in the catheterization. She was literally hunched over, screaming
with pain for 30 minutes.

Despite these two unfortunate incidents, Carol reports that she has suffered
only slight nausea from the chemotherapy, and is actually feeling better
than when she started chemotherapy.

Carol will tell you that she has no hobbies other than working very hard
and spoiling her four grandchildren. She was exposed as a child to the
asbestos-contaminated clothing of another hard worker, her father, who
built large industrial smokestacks and furnaces in the Detroit, Michigan
area from the 1940s through 1975. Of course, Carol's father had never
been warned of the dangers of asbestos, and was heartbroken to learn that
he had been an unwitting agent of his daughter's disease.

Faith sustains this family. About three years ago, Carol's daughter
Shawn became friends with the daughter of a man named
Fred Ockerman. Shawn now feels that it was "divine providence" that she became
friends with the daughter of a mesotheliotic. From what she learned from
her friend, Shawn was able to help her parents make good choices in stressful
circumstances. Shawn cites providence again in the way her mother was
pointed early on to Dr. Harvey Pass, who in her view has exceeded his
reputation as a caregiver and mesothelioma treatment expert.

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